Bridging the Disconnect Between Patient Wishes and Care at the End of Life

NIHCR Policy Analysis No. 12

Most Americans want to die at home, but most die in hospitals or other facilities. Most people care more about quality of life than prolonging life as long as possible, but many receive invasive, life-sustaining treatments that diminish quality of life. Often, the disconnect between patient wishes and actual care near the end of life reflects reluctance by patients, family members, clinicians and society at large to acknowledge the inevitability of death and openly discuss end-of-life care. Other barriers to high-quality end-of-life care include a fragmented delivery system that hinders care coordination and communication of patients’ wishes across care settings and payment policies that discourage clinicians from discussing end-of-life care preferences with patients and instead encourage aggressive treatment. Along with increased public engagement about the issue and broader reforms to foster patient-centered care, policy options to improve end-of-life care include greater use of shared decision making among patients and clinicians, improved care coordination, greater integration of health care and long-term social services, more use of palliative care to relieve pain and other symptoms outside of hospice, better access to hospice services, and training clinicians to discuss end-of-life care preferences with patients and families.